Current practice of hospital-based palliative care teams: Advance care planning in advanced stages of disease: A retrospective observational study

Background Specialist palliative care teams are consulted during hospital admission for advice on complex palliative care. These consultations need to be timely to prevent symptom burden and maintain quality of life. Insight into specialist palliative care teams may help improve the outcomes of palliative care. Methods In this retrospective observational study, we analyzed qualitative and quantitative data of palliative care consultations in a six-month period (2017 or 2018) in four general hospitals in the northwestern part of the Netherlands. Data were obtained from electronic medical records. Results We extracted data from 336 consultations. The most common diagnoses were cancer (54.8%) and organ failure (26.8%). The estimated life expectancy was less than three months for 52.3% of all patients. Within two weeks after consultation, 53.2% of the patients died, and the median time until death was 11 days (range 191) after consultation. Most patients died in hospital (49.4%) but only 7.5% preferred to die in hospital. Consultations were mostly requested for advance care planning (31.6%). End-of-life preferences focused on last wishes and maintaining quality of life. Conclusion This study provides detailed insight into consultations of palliative care teams and shows that even though most palliative care consultations were requested for advance care planning, consultations focus on end-of-life care and are more crisis-oriented than prevention-oriented. Death often occurs too quickly after consultation for end-of-life preferences to be met and these preferences tend to focus on dying. Educating healthcare professionals on when to initiate advance care planning would promote a more prevention-oriented approach. Defining factors that indicate the need for timely palliative care team consultation and advance care planning could help timely identification and consultation.


Reason for hospitalization
Nature and extent of the burden and risks associated with participation, benefit and group relatedness: There is no burden for the patient as this is a retrospective study design.

INTRODUCTION AND RATIONALE
The quality of hospital-based care for patients with palliative care needs is still suboptimal.
Identification of patients with palliative care needs and end-of-life-preference discussions often do not take place (1, 2).Furthermore, there is no clear plan for the treatment of symptoms when the patient is at home.This may result in undesirable unplanned hospital readmissions in the last phase of life (3).
Also, certain procedures (such as ascites paracentesis) may well be performed in primary care by a trained doctor, however when trained doctors are not available, the patient will be admitted to the hospital for this procedure.
Currently, an increasing number of hospitals form a palliative care team.The Dutch foundation for oncology collaboration (SONCOS) even added this as a requirement for cancer centres, becoming effective from January 1 st , 2017 on.With these norms, hospitals are required to have a multidisciplinary palliative team that measures patients' palliative care need and is accessible for consultation.The goals of these palliative teams are twofold: to improve quality of intramural palliative care and to improve communication and collaboration with primary care (4).
There is evidence that the number of people who die in the hospital and the number of transfers in the last three months of life are lower when a GP is the main coordinator of (palliative) care and if there are sufficient resources in primary care (5).Therefore, expanding the hospital-based team to a transitional palliative care team that consists not only of hospital professionals, but also professionals working in primary care (GP and community care nurse, both specialized in palliative care) might help tackle the described issues.
The OLVG hospital in Amsterdam currently has a transitional palliative care team and the number of consultations is rapidly increasing over the years.Approximately 75% of the consults takes place during hospitalization and the rest in the outpatient department.Their structured approach to the wishes and preferences of the patient as their primary priority, and good communication with the GP is an ideal example for hospital based transitional palliative care teams.The OLVG has such a transitional team and the current study aims to explore the work of this team.

OBJECTIVES
In this exploratory study, we will investigate opportunities and threats of a (transitional) palliative care team.Objectives: -To explore reasons of hospitalizations of patients for whom a palliative team was consulted in the hospital;

STUDY DESIGN
Retrospective analyses of patients with a palliative care team consultation between January and May 2016 in the OLVG location East.
We will analyze data on the period of the consultation itself, 6 months prior to first consultation (prior hospitalizations and disease history) and 6 months after first consultation (follow up).
Timeline (recruitment of new consults of the palliative care team between January and May 2016)

Population (base)
Patients of whom the palliative care team was consulted for the first between January and May 2016 with a complete consultation of the palliative care team

Inclusion criteria
In order to be eligible to participate in this study, a subject must meet all of the following criteria: -Adult (≥18 years) -Consulted by the palliative care team

Exclusion criteria
A potential subject who meets any of the following criteria will be excluded from participation in this study: -Incomplete consult without discussion in multidisciplinary meeting

New patient between January and May 2016
-6 months Disease history History of hospitalization +6 months follow up: hospitalizations, treatment and place of death

Sample size calculation
Due to the exploratory nature of this study, a sample size calculation is not possible.In our opinion, a sample of 50-60 patients will be sufficient to explore the objectives of this study.With 175 complete consultations in 2015, inclusion of patients in the first 4 months of 2016 will result in a sample between 50-60 patients.

Study procedures
As this is a retrospective data analyses study, informed consent will not be required.
The palliative care team hands over a list of new consults in the period between January and May 2016.The researcher appoints a research number to each subject on the list.With use of the electronic medical file and insight into DBC registration, the following variables will be collected: In 6 months before Non-substantial amendments will not be notified to the accredited METC and the competent authority, but will be recorded and filed by the sponsor.

Annual progress report
The sponsor/investigator will submit a summary of the progress of the trial to the accredited METC once a year.Information will be provided on the date of inclusion of the first subject, numbers of subjects included and numbers of subjects that have completed the trial, serious adverse events/ serious adverse reactions, other problems, and amendments.

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based in the hospital, with a GP and/or home care services in the team) might therefore be the solution.The OLVG has such a transitional team and the current study aims to explore the work of this team Objectives: To explore reasons of hospitalizations of patients for whom a palliative team was consulted in the hospital; -To explore why, when and by whom the palliative team was consulted; -To explore needs and expectations of the patient with regard to the palliative care team; -To investigate whether agreements with and wishes of patients (with regard to hospitalizations, treatments and preferred place of death) are fulfilled after they had a consultation from the palliative care team; -To investigate prognoses estimated by nurse specialist with actual time to death; -To explore communication between the palliative care team and GPs and home care/care homes; To explore which % of consultations is financed and what are reasons for not financing a consult (according to DBC-registrations) Study design: Retrospective study Study population: adults, treated in the OLVG hospital, consultation by the palliative care team.

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To explore why, when and by whom the palliative team was consulted; -To explore needs and expectations of the patient with regard to the palliative care team; -To investigate whether agreements with and wishes of patients (with regard to hospitalizations, treatments and preferred place of death) are fulfilled after they had a consultation from the palliative care team; -To investigate prognoses estimated by nurse specialist with actual time to death; Transitional palliative care team Version 2.0, 29-07-2016 7 of To explore communication between the palliative care team and GPs and home care/care homes; To explore which % of consultations is financed and what are reasons for not financing a consult (according to DBC-registrations)

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reasons of hospitalizations of patients for whom a palliative team was consulted in the hospital; -To explore why, when and by whom the palliative team was consulted; -To explore needs and expectations of the patient with regard to the palliative care team; -To investigate whether agreements with and wishes of patients (with regard to hospitalizations, treatments and preferred place of death) are fulfilled after they had a consultation from the palliative care team; -To investigate prognoses estimated by nurse specialist with actual time to death; -To explore communication between the palliative care team and GPs and home care/care homes; To explore which % of consultations is financed and what are reasons for not financing a consult (according to DBC-registrations) Reasons for hospitalization of patients for whom a palliative team was consulted during hospitalization.With use of an expert panel, we will discuss preventability of these hospitalizations in the analysis phase of the study.-Timing& reasons for palliative team consultation & profession of person who consulted the palliative care team -Needs and expectations of patients with regard to palliative care team consultation Transitional palliative care team Version 2.0, 29-07-2016 9 of Fulfilment of agreements with and wishes of patients (with regard to hospitalizations, treatments and preferred place of death) Agreements available/wishes noted during consults with palliative care team regarding future hospitalizations, treatments and preferred place of death o Agreements and wishes fulfilled 6 months after consultation?-Estimated prognose by nurse specialist and actual time to death -communication of the palliative care team with GPs and home care/carehomes: o Timing & amount of communication o Oral/written communication o Content of handover -Financing of consultations and reasons for not financing a consult (according to DBCregistrations) Other study parameters (if applicable) -Date of birth -Diagnosis + timing of diagnosis -Number of acute hospitalizations in 6 months before consultation of palliative care team -If inpatient clinic: hospitalization department -Number of consults by palliative care team -Number and type of specialists during MDO meeting where patient is discussed 8.2 Randomisation, blinding and treatment allocation NA

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Date of PT consultation -Reason for PT consultation -Number of consults by PT during Descriptive statistics (mean±SD, median (IQR) or count (%)) will be used to describe the study sample with regard to all outcomes.The study will be conducted according to the principles of the Declaration of Helsinki, the 7 th revision (2013) and in accordance with the Medical Research Involving Human Subjects Act (WMO) and other guidelines, regulations and Acts 11.2 Recruitment and consent The nurses of the palliative care team of the OLVG will hand over a list of patients consulted by the palliative care team between January and May 2016.Because of the retrospective design and poor prognosis of the patients, informed consent is not necessary and / or possible.Transitional palliative care team Version 2.0, 29-07-2016 11 of Objection by minors or incapacitated subjects (if applicable) NA11.4 Benefits and risks assessment, group relatednessThis study will give insight into the work of the palliative care team.A report with results will be send to the palliative care team and hospital directors in order to improve the work of the team.Handling and storage of data and documentsData will be handled confidentially and anonymously.Each recruited patient will get a research number.A secured subject identification code list will be used which is only accessible by the principle investigator.Substantial amendments which would change the nature of the study will be notified to the METC that gave a favourable opinion.

LIST OF ABBREVIATIONS AND RELEVANT DEFINITIONS ABR ABR form, General Assessment and Registration form, is the application form that is required for submission to the accredited Ethics Committee (In Dutch, ABR = Algemene Beoordeling en Registratie) AE Adverse Event AR Adverse Reaction CA Competent Authority CCMO Central Committee on Research Involving Human Subjects; in Dutch: Centrale Commissie Mensgebonden Onderzoek CV Curriculum Vitae DSMB Data Safety Monitoring Board EU European Union EudraCT European drug regulatory affairs Clinical Trials GCP Good Clinical Practice IB Investigator's Brochure IC Informed Consent IMP Investigational Medicinal Product IMPD Investigational Medicinal Product Dossier METC Medical research ethics committee (MREC); in Dutch: medisch ethische toetsing commissie (METC) (S)AE (Serious) Adverse Event SPC Summary of Product Characteristics (in Dutch: officiële productinfomatie IB1-tekst) Sponsor The sponsor is the party that commissions the organisation or performance of the research, for example a pharmaceutical company, academic hospital, scientific organisation or investigator. A party that provides funding for a study but does not commission it is not regarded as the sponsor, but referred to as a subsidising party. SUSAR Suspected Unexpected Serious Adverse Reaction Wbp Personal Data Protection Act (in Dutch: Wet Bescherming Persoonsgevens) WMO Medical Research Involving Human Subjects Act (in Dutch: Wet Medisch- wetenschappelijk Onderzoek met Mensen SUMMARY Rationale:
The quality of hospital-based care for patients with palliative care needs is still suboptimal.Identification of palliative care needs and timely discussion of the patients' wishes and preferences often not take place.It was stated by the SONCOS working group, that from 2017 on, hospitals need to have a palliative care team available.Studies suggest that when a GP is coordinator of palliative care of a patient, unwanted hospitalizations may be prevented.Transitional palliative care teams